From WXXI news this is connections.

I'm Evan Dawson.

Our connection this hour was made with a dementia diagnosis.

The National Institutes of Health says the dementia affects more than 6 million Americans and accounts for more than 100,000 deaths each year.

The Alzheimer's Association has slightly different numbers.

They estimate 7.2 million Americans are living with Alzheimer's, dementia.

More than two thirds of caregivers are women.

More than one third are now over the age of 65.

Caregiving is a growing challenge, and this hour we'll explore what is being done about that.

And this is a special edition of connections.

We have a live audience here.

Audience.

Can you welcome the panel to the program?

Thank you for being with us.

And we're going to introduce the panel now.

With us in studio is doctor Carol Gorski, who is director of the Finger Lakes Center of Excellence for Alzheimer's Disease and clinic director of the You Are Medicine memory Care program.

Carol, welcome.

Thank you for being with us.

Nice to be here.

Welcome as well to Jennifer Luzinski, vice president of marketing for Saint John's Senior Living.

Thank you for being here.

Thank you.

Barbara Smith is back with us, a caregiver for her husband and really one of the favorite people we have met on this program.

Sharing your story.

Welcome back.

Nice to see you.

And welcome to Katie Allen, division leader for caregiver services at Life Span.

Thank you for being here as well.

We welcome audience feedback and there's a lot of different ways to do that.

You can join us on the YouTube chat if you're watching on the Sky news YouTube channel.

Hello there.

If you are listening on the various platforms, you're streaming, etc., you can call the program toll free.

It's 844295 talk.

It's 8442958255263.

Skype call from Rochester 2639994.

Or you can email the program connections at Zorg.

We're talking about dementia more generally.

We are going to talk about Alzheimer's.

We're talking about caregiving, and we're talking about what the experts have to say.

But we want your voice as well.

I'm going to start with Carol, and I just want to ask you, you know, you look at the numbers and they can be really jarring.

it's a certainly it's an issue that at least it looks to me like it continues to grow as we hopefully live a little longer.

But what is what's the story in our community?

I mean, how significant a challenge?

And are we getting better at dealing with this challenge in our community?

Right.

Well, in, we have around 25,000 people estimated to have dementia in our region.

And, at the memory clinic, I can tell you we get approximately 11 or 1200 referrals a year for a new diagnosis.

That and and we're not the only one.

There's also another one at Rochester Regional.

And they get about the same number.

So that is a phenomenal number of people who are looking for a diagnosis.

And what is that process like to get that diagnosis.

well, it's it's long to get in, right?

That's one of the problems is that, the Alzheimer's Association has documented, well, that we don't have enough providers who are interested in doing this.

So our wait times are usually at least six months long.

but I think that the process of getting a diagnosis usually, involves taking a detailed history.

now we also have the, scans available, and I think that the thing that is changing things is that there are new medications on the market.

And now that there are biomarkers that can test whether people do have amyloid deposits in their brain, that's a game changer, because now a lot of people aren't coming just for a diagnosis, but they're coming in to be able to see if they qualify for the new medications.

But these biomarkers have taken a lot of the guesswork out of diagnosing because we can tell now through, cerebrospinal fluid or blood tests or Pet scans, whether or not people do have amyloid deposits on their brain and doctor Pat Gorski, I'm thinking of a family that may wonder if they need a diagnosis and may want information and then to be told absence, the absence of biomarkers to be told.

You may have to wait six months to get a diagnosis that can be agonizing, terrible.

And so without enough, services providers, I mean, what's what is this?

So we are trying to, the departments of psychiatry and neurology are trying to get people who might have had a diagnosis from another provider who are interested in their trials, to have a back channel so that they don't have to wait the six months.

So if somebody does have confirmation that they do from another provider, there's a fast track in Jennifer at Saint John Senior Living.

What's, what's the story you're seeing in this community right now?

Yeah.

So I think about our journey actually began almost a decade ago.

We were starting to see the trends.

85% of our population was coming into skilled care with some form of dementia, and we knew we needed to address that.

we actually, brought in staff training and, wraparound services for the families.

That was the first time we were really, providing support to the families.

because, you know, up until that point, people would come into care and really, the family was out of the picture.

But we, with this whole, insight onset of dementia, we were providing support to families.

And what we learned was they were really coming to us at the end of their journey.

they they had so much time that they were caring for their loved one in their home.

Early, early onset was years before.

So couldn't we have this opportunity to reach people where they're at?

And you, Carol, talk about the fact that there aren't enough services.

So one of our ideas at that time, right before Covid, was to develop an online dementia resource center that could really meet people.

So you get that, you start to see stuff going on at home.

You feel like something's wrong.

You can't get in to see the doctor you Google, you know, you try to what's out there.

so we really found that that was a need that was unmet, that we could really provide.

And that's just taken off.

I mean, with the pandemic, people were isolated from services at that time.

we're now seeing like 1200 visitors a month to our website, to access resources.

And they're finding us from across the country.

And that really was the first stage of what we hope to do in building a dementia center of excellence.

And now we want to do a physical center, because the need is there for the support of the caregivers, to come in and have respite.

we've started a respite program.

So we're just breaking the iceberg on what we hope to do to reach out to those caregivers in the community right in the moment.

We're going to talk to Barbara.

Let me go to the end of the row.

First, Katie Allen, Division leader for caregiver services at lifespan.

What are you seeing in this community?

And I think, you know, at lifespan, we were able to open the Finger Lakes Caregiver Institute in 2016 with support of the New York State Department of Health.

We worked very closely with everyone on the panel, and it's a joy to see Barbara again.

Also, one of my favorite people.

and I think for us, we really are focused on the the community based side and supporting both people with living with dementia and their family and friend caregivers.

And so we have a variety of services.

One of the things that we see in that sort of six or even longer wait to get into to see a physician, is we can begin working with a family to, to get them connected to education, to have the availability of, of respite, to wellness classes, to all of the things that as a whole family, it takes to support, caregivers and people living with dementia.

I think what I think about all the time is we talk all the time about it takes a village to raise a child, but what we don't necessarily talk about is in every stage of our life, community is so important.

And I think especially if you're a family caregiver of anyone, but in particular, for the caregiver and the person living with dementia, having that community support is so valuable with quality of life.

well, let's talk to Barbara.

And listeners may remember some of Barbara's story.

I don't know how you'd forget it.

We do.

If you're going to hear some of our story, if you're watching on our YouTube channel, we've got some pictures that Barbara has shared.

But, Barbara, I want to start by asking you.

I look at the numbers.

More than two thirds of caregivers for patients with dementia are women.

More than one third are over the age of 65.

And, you know, I know it is not easy, but I want to give you some space to tell the story of your family.

For our audience who hasn't heard it.

Well, looking back, my husband was diagnosed with dementia in 2018, so it's been a few years and it progressively gets a little bit more intense over time, as everybody knows.

And so it changes, lots of changes over time.

And so you're always looking for, okay, how can we do this particular thing or how will we do this particular need.

Look at look at what is needed.

And so I heard about they're coming with a resource center at Saint John's.

And I heard about from lifespan that there were going to be testing services and so on.

And so I said, I'm going to Saint John's.

And we've loved being there because, there's lots of support people.

People know who we are.

And I'm I'm not somebody who doesn't tell people that my husband has to match.

I do you you probably already figured that part out about me, but, and so, so people know.

And so people see us together and they, you know, they reach out and say hi to, you know, provide some socialization to both of us.

And it works when, when you first really were confronting this, what were you seeing and noticing that was the most prominent, you know, the looking back, the probably the first thing I noticed was, and this you're going to laugh probably when you're here.

This was he was driving over the curb on the right hand side when he turned around, you know, to make a right hand turn.

And I thought, that's strange.

And now, looking back, I'm sure it was the beginning of some visual perceptual kinds of things and the the peripheral vision narrowing.

And so, but it started way back before I even was thinking about anything else.

So that was the first thing.

And then, of course, I just became a little bit aware of watching for other things, and it just grew and grew.

So when you talk about how it becomes more intense over time, tell me a little bit about some of that progression and what the biggest challenges have been.

Yeah.

Well, you know, you know, people think Alzheimer's is just memory, but it's so much more the visual perceptual kinds of things are one thing.

you know, the remembering where they put anything, it's still a memory.

But, you know, we lose things all the time and, you know, are we getting ready to go somewhere?

Is the jacket.

Oh, I forgot something was in my pocket, but I forgot what it is, where is it, etc..

So there's just so many little steps.

And so those things increase.

You know, I'm still pretty independent as far as, you know, taking a shower and that sort of thing needs some guidance maybe, but not too much.

But you know, you forget about what you do to get, toothpaste on your toothbrush.

And oh, he missed because he couldn't see the, the connection between the two.

And so the toothpaste, it's all over the sink.

So then you have to go in and figure out, okay, what do we do next to make sure he gets the toothpaste on the toothbrush, etc.?

You get the point.

And how do you then make sure that your own capacity to not feel overwhelmed or even frustrated or angry at times because you know, it's not his fault.

I mean, and nobody wants to be dealing with that, right?

but it also can wear on a caregiver.

how how have you handled that?

Yeah.

Well, you just have to have a lot of patience.

And I have to say I get frustrated, too, so I can't say that I never get frustrated, but, you just have to, you know, realize.

And I think it's it's acceptance.

Really accept that he didn't do it because he wanted to.

He didn't do it because, you know, any other kinds of reasons.

He just can't he can't remember.

He can't remember to do it or can't remember.

He can't remember how to use utensils when he's eating as much anymore.

And so I have to cut off the meat.

Well, I just have to keep track and whatever.

And I don't get frustrated because I do it.

And then guess what?

He gets to eat it.

All right.

So you see the progress as you make changes and so on.

Well I mean I think you're human.

So anybody is going to have frustrating moments.

Yep.

So one of the reasons that the co-panelists that you have here, so excited for you to be part of these discussions is that you have modeled in such an amazing way, and us getting to know you over the years, what caregiving looks like when you when you have some support.

Yeah.

And when you have some patients and can do it lovingly.

But what are the supports that you do need and what do you think people who are going to be in your shoes will need as caregivers?

Well, the first one I would mention is Russ, but I mean to give me some time away from him and I want to say it's him some time away from me as well.

He is with other people who have similar needs, and he's with people who are providing activities for those people.

And he gets to do that.

And he likes it.

So it's good for him too.

But that's the first thing that I need is, is Russ.

But and we are now set up.

So he goes for afternoons per week and that amount seems to be working well for us right now.

And Barbara, we hear sometimes that about music or other cues that that do help people stay connected with memory.

Are there things that help your husband more than others?

Whether it's music or something else, staying in a routine is a big one.

you know, I get tired of the routine a little bit sometimes because I'm a, a little bit more, you know, do something when you want to find the person.

Yeah, but we get up, we eat breakfast.

And that's one of the benefits of being at Saint John's also, because their meals are, you know, schedule their course and and so on.

So we have our meals there.

But the routine is very important if, if something is different in the routine, it's amazing how it shows up and his behaviors.

He becomes more nervous or agitated or whatever.

and then then we can correct.

Okay.

We we talk about it, we, you know, say, oh, the next thing we're going to do is this, you know, can't tell time anymore.

So I have to I'm forever saying it's it's 12:00.

It'll be an hour before we do so-and-so.

And so just coping Jennifer Luzinski, what do you hear in this story?

Well, I love Bill and Barbara both.

I love the piece about they need time to.

Bill needs time to.

And that's what I'm seeing.

Bill comes to our program once a week.

and he has a group of friends, and they pick up right where they left off.

And I was saying to Carol, when we were waiting in the lobby, the model that we hoped to create is when you walk in that room, the room for respite, that you can't tell who's the care receiver and who's the caregiver, that, they're just a group of people that like being with each other, that are enjoying activities together.

And, and they look forward to it.

And, we, we know that, folks look forward to it.

And we hear from the caregivers that drop them off.

they kept asking me when it was time to come to the program.

And, you know, they were really looking forward to it today.

So, and they arrive and they have a lot of fun.

And, they pick up where they left off the next week.

You know, it's it's a it's great.

So that's what I'm hearing.

I do see that in Bill.

I do hear that in Barbara.

We've had chats about, you know, what she's going to do today.

And sometimes it's just to get some errands done or, you know, just go take a nap if you want to.

But you know that that's their time.

It really doesn't matter what they're going to do.

It's the time for them.

And Bill has his time with us.

I want to read an email from a listener that all of our guests, I think will have some things to say about, and it's a it's a rather lengthy one.

I could not call in, but Joy wanted to share this.

She says my story involves caregiving.

For the 14 years that my husband, Matt, had vascular dementia, I first noticed a problem in 2010 with some progression between 2011 and 2012.

After that, the memory loss moved right along, and his diagnosis was not Alzheimer's.

Because he had no plaques, the man in his family had a history of vessel disease that affected their legs.

Matt's problem was not his legs.

The vessels affected were in his brain.

He was never violent or abusive, and for that I was extremely grateful.

We lived in our house in Elmira.

We traveled when we could, and we just dealt with his lapses, which he often recognized and asked about.

I'm a retired medical editor and could explain the medical issues to him.

Then in 2021, we were both turning 80, and I realized that if anything happened to me, he could not call 911 because he couldn't talk much at that point.

He didn't know where we live.

He never used a cell phone, and I could very easily lie on the floor without any assistance.

That's when I knew he had to be in memory, care for his safety in mind.

We were able to get him into Bethany Village in Horseheads into their wonderful memory care unit in June 2021, just as Covid restrictions were ending, he thrived.

They enjoyed him because he had his sense of humor intact and loved to just walk the halls even when he couldn't find words.

His basic, laid back, easy personality never changed.

But you know, the rest of the story the deterioration, the inability to communicate, not recognizing anyone, even telling me he didn't know my name, and finally, the inability to walk easily or to swallow.

In February 2023, he died peacefully with me, holding one hand in his daughter, holding the other.

Obviously my life has changed, but one of my goals now is to spread the word about dementia and how a spouse or child or any family caregiver can manage the shock, the agony, and the work that caregiving presents.

When someone says memory loss, people automatically think Alzheimer's, which is sort of a pet peeve of mine.

Many different kinds of dementia exist, and they are somewhat forgotten.

In the messages about memory loss, I try to tell people that all dementia is not caused by Alzheimer's.

That is Joy's email.

Joy.

Thank you for sharing your story and the story of Matt.

and I want to ask, our panel to weigh in.

Carol, do you want to start?

Sure.

Did you say the joy?

I think joy is right.

There are there are dozens of types of causes of of dementia.

And sometimes we do paint them all with the same brush that they're all similar, but the presentation is different.

Some of the treatments are different.

the manifestations of the illness and the, demands on the caregivers are very different.

So she's absolutely right.

I think the other thing that Joy has in common with Barbara is they're both, they both embraced learning how to be a caregiver.

And I think one of the most startling things is that for every 100 family caregivers of dementia, only 30 take advantage of services.

I know Katie would find that hard to believe because their phone's ringing off the off the hook, but the reality is only about 30% of people will wake up to this.

And face it, when I listen to Barbara's story, I loved hearing what she was saying because she's proactive.

She has some problem solving orientation like, how can I fix this?

I'm going to check out what resources are available.

I'm going to take advantage of them.

But for every everyone like Barbara, there are a number of people who won't walk up to getting the diagnosis, won't walk up to seeking any type of help at all.

But what comes so much not knowing?

a lot of people don't want to know.

I think there's a lot of there's a lot of reasons we have caregiver services.

Some people don't see themselves as caregivers.

some people have such burden that they're exhausted, and they know if they pick up the phone, they're going to have to go through and give all that information and find all those records again.

they might know that they're going to, irritate another family member who thinks mom's just fine and they don't want family conflict.

They don't have costs, they don't know their finances, they don't have access.

There are a lot of reasons people don't use services, and there really are services.

Even though we have a resource rich community, they are still difficult to navigate.

So I think some people just are afraid to step into that.

Katie, what would you say to Joy?

Well, Joy, thank you for your email.

And, I'm so pleased to know that you were able to connect, with a place that, gave Matt and you and your daughter a really, sounds like a great quality of life, especially at the end of his life.

I'd also love for you to give me a call.

It sounds like you want to do some education advocacy, and we would love to connect.

you know, and I think, what Carol is saying is, you know, about that sort of 30% and 70% of of family caregivers don't reach out for help.

Again, for a whole variety of reasons.

We're happy to have more calls to us.

I think what we find when people do connect with us is what they say to us are literally things like, you saved our life.

I do think that education and it shows the value of diagnosis is that, you know, Matt had vascular dementia presents differently.

Some treatments are different.

but some universal truths in there, which are the the, the impact to their whole family unit, and connecting to support and, and I think the education whether you're concerned about a diagnosis or recently after a diagnosis is so valuable.

We're so fortunate to have, a really wonderful chapter of the Alzheimer's Association locally and, a huge variety of online education that they do and in person, as well as all the education that we provide at lifespan.

I think the other thing is planning, heard Joyce say about while I was 80, what if something happened to me?

Matt couldn't dial the phone.

And we do regular planning workshops for folks that really started in Covid when caregivers called and said, oh my gosh, I never thought something might happen to me.

I'm only I'm, I'm 50 and my dad is the one I'm worried about.

And so really thinking about planning for yourself as a caregiver, but also planning for all of us.

We talk a lot about advance directives.

There is a, tool, it's called the dementia Values and Priorities tool that every one of us as an adult can fill out.

This says essentially, if I were to get dementia and if age is the biggest indicator, if we live long enough, our, likelihood increases, doesn't mean we'll all get it.

But it looks at those things and we're able to say to the people that may care about us, this is what I would like if I no longer recognize my family and friends.

Do I want aggressive treatment, moderate treatment, or let let me be.

and so that's really valuable tool that, we don't necessarily we'd love to get the word out about it as we're doing our advanced care planning is to really look at that tool as well on, the specifics of dementia.

It is the one, one of the few a terminal diagnosis where it's putting those wishes in writing right away is so important.

if we have a cancer diagnosis, we still have, time where we're cognitively fine to let our family know what our decisions and our thoughts and our wishes are.

Dementia.

So with that diagnosis, where we will lose the ability to do that.

So I think planning and and please give me a call joy.

Barbara, anything you want to say to Joy.

Just a it's good to hear from another caregiver, but, you know, it's supporting itself just to know somebody else's going through that kind of thing, although she's at the end of her journey.

But, so, you know, solidarity.

Yeah.

Yeah.

Powerful.

let's take a phone call if we could.

I think we have Tim in Pittsford on the line.

Let's take that now.

Hi, Tim.

Go ahead.

Hi.

Thank you for taking my call.

I just want to say that, I.

And Alzheimer's and dementia in my family, I've lived with it with my grandmother, and now my mother is going through.

My dad's doing a great job of taking care of her at home.

And one thing when I'm spending time with her just helps me to remind myself that she's living in the moment and truly in that way.

And my experience is to try to make her moments as positive as possible and take away any expectations of what she should be doing or should be capable off and it just makes that experience of a caregiver and also our relationship much better.

Tim, thank you for sharing that.

I mean, I want to start with Barbara and ask what you make of that approach.

Thank you Tim.

Go ahead.

Barbara, great.

Yeah.

I mean, everybody is going to have things that work for them.

Doctor Pat Gorski, what do you hear there?

I think that Tim is spot on.

I think that sometimes when we have expectations, it makes it more frustrating.

But to meet somebody where they are, I always say sometimes you have to like, put your Sherlock Holmes hat on and be curious about what the person's thinking or feeling or and just try to join them where they are.

So I think that Tim has absolutely the right approach to it.

What did you hear there, Jennifer?

Yeah.

So, moments of joy, we have what we call a joy plan.

we actually have a free downloadable template.

and we use it at Saint John's, and it's all about filling out what you think will bring joy to your loved one with dementia and remembering that and just and that they can still experience joy.

Right.

But it's it's in the moment joy.

And it may change from day to day, minute to minute.

But, it's about meeting with them where they're at and, creating joy for them, for for them and for yourself.

I mean, as the people that are interacting with the the people with dementia, it can be it's a it's a collaborative experience, but things can be so much more joyful for all of you and engaging all their senses and being attentive to all the senses.

Yeah, yeah, yeah.

I mean, I mean, that's we've talked about safety.

We've talked about, different services, resources.

But joy is a big part of quality of life.

And Barbara, you and Bill still find joy.

Yes, definitely.

you know, we we keep going and we we do in the moment.

Enjoy something you will remember.

I think somewhere I read three seconds, he remembers the three seconds.

And so we get those three second things and every now and the and you want to add here Katie Allen.

thank you, Tim, for your call.

I think one thing I would like to add is we have a, program called, the memory Cafe that we started a while back.

And these are opportunities.

We have one almost every month in Monroe County and across the Finger Lakes region.

But these are incredibly joy filled, experiences.

So they are two hours long.

family caregiver and the personal dementia come together.

We have food.

We often have music, such a valuable tool or other activities.

And that room is filled with joy.

It is.

People making is, as Barbara said, those connections with other caregivers, walking a similar journey, connecting with other people living with dementia.

They are free.

Check out our life span website.

But I really hear the joy, the value of living in the moment, being present.

I think whether we have a dimension diagnosis or not, whether we're a caregiver or not.

a reminder to all of us to live in the moment, to be present with those that we that we love and that lasts us is so valuable and and really powerful when we are caring for someone, who whose moments are very different.

Well, we have to take our only break of the hour.

When we come back, we've got more feedback from listeners and members of the audience for our panel, and we are still time to work that in.

If you want to email the program connections at Zorg.

Tim, thanks for the call.

You can call the program 844295 talk.

It's (844) 295-8255.

We are talking in studio.

You just heard Katie Allen, division leader for caregiver services at lifespan.

And then a right to left on the stage.

We've got a live audience here.

It's a special edition of connections Barbara Smith is a caregiver for her husband Bill, telling their story.

Jennifer Luzinski, vice president of marketing for Saint John Senior Living.

And Carol Gorski is with us.

Doctor Pat Gorski is director of the Finger Lakes Center of Excellence for Alzheimer's Disease clinic director of the are Medicine to Memory Care program.

We're coming right back to more of your feedback.

On the other side.

I'm Evan Dawson Wednesday on the next connections proposed cuts to cancer research coming from the federal government.

What does that mean for the future of cancer cures, research, treatment and more?

We'll talk about it first hour.

In our second hour previewing pride and different events happening around our community.

Talk with you on Wednesday.

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This is connections.

I'm Evan Dawson.

This morning in preparation for this program, I got an email from Andy who wanted to know if anything that's happening at the federal level with health care or with funding could affect services and availability.

and I don't know if we know the answer to this yet, but I'll ask our guests if they want to weigh in.

Katie Allen, I'll start with you.

Division leader for caregiver services.

The lifespan, any concern about what is on offer or any supports, funding, etc..

I think there's great, great concern at lifespan and across sort of our, all of our nonprofit and community based agencies across the region, I think as, as what lifespan, you know, we continue to do the work that we do.

I think we we push forward.

Anne-Marie cook is an incredible advocate, and she is our president and CEO.

And, we keep doing what we do.

Certainly a concern and certainly, advocacy, I think, on all of our parts as much as we can, that these services are incredibly, incredibly valuable and needed to be fair.

Katie, this is why should you be asking your CEO, not you?

This.

Yes, a nice way of saying as the CEO, but to be fair, let me just ask you a general question.

What are you worried about that could change if cuts happened?

I worry about older adults and family caregivers being left with fewer or no options for support.

And again, we we cannot do this alone.

The the incredible risk that we place across all of our services, not just caregiving and dementia services to people who already are struggling to to really be left without options and without support.

Okay, we'll come right across the we're going to skip Barbara on this one.

Thankfully for Barbara, Jennifer Lawrence at Saint John's.

Again this is a little bit of far afield here.

It's not necessarily CEOs.

But I'll ask you I mean you concerned we're living the reality.

yeah.

As a nonprofit.

we think about that all the time.

The the funding streams.

Right.

And how can we diversify?

I think one way we do that is through our fundraising efforts, and that's right up my alley.

we are conducting a capital campaign for a physical dementia resource center, and we want to make these services available to these caregivers for free.

We don't want to have to charge, they're already going to be hit with health care.

It costs.

so, it's a it's a passion for us.

the more support we can get financially, for our services, the more people we can help.

and we can help, you know, eliminate the strain that they're feeling in other areas.

So.

And then, you know, on the Medicaid funding side, that's that take a whole other hour of your time to talk about that.

But that's, that's that's a harsh reality we're all facing right now.

And it's going to be a huge a huge impact on the community.

Doctor Gorski and so I have to say the same, Medicare and Medicaid are the biggest funders for the medical center.

the Finger Lakes Center of Excellence for Alzheimer's Disease is partially Medicaid funded.

and that provides a lot of the wraparound services and things that don't get reimbursed, through insurance companies.

I think that would be a tremendous loss.

I think the other thing, I was recently in Albany and the state office for the aging was concerned that, you know, their federal counterpart, the administration for Community Living, is hanging in the balance.

The Older Americans Act, which funded senior centers, is hanging in the balance.

We don't know.

They're on the chopping block, but nobody knows if they'll just be scaled back or eliminated altogether.

and that's our senior centers and all of the support services, and it's it's, you everything's everybody's living in a tenuous situation right now, and I, I don't bring this up.

I mean, this is not meant to be a political conversation.

We're trying to speak functionally about what happens.

Right?

Some of the rhetoric I'm hearing from Washington is that, well, the only cuts would be the people who are sort of gaming the system anyway.

And we're not really going to see people who need services Medicaid, Medicare, whatever, really be cut here.

Do you?

We don't have any way of knowing that.

Right.

But I do know that the patients and caregivers that I work with in the dementia clinic, I would say eight out of ten people, I might see in a day will mention that they are terrified of losing Medicare, Medicaid or Social Security.

Terrified.

So we don't know if it will just be cutting waste or whatever.

But people are really scared.

Okay.

And Jennifer, anything you want to add on that point?

Yeah, I mean, people are accessing life span services because they're free.

And our respect program because they're free.

that would be a barrier for some people to get the support that they need.

So I think that speaks for itself, that there's a real need for for services without cost.

I agree with that, Katie.

Yeah.

I think if 70% of caregivers are so overwhelmed to reach out and make the first phone call, they're not gaming a system.

They don't have the the energy or the wherewithal to do that.

I mean, again, not to be political, but I do think that any cuts to, to federal funding that supports older adults, that supports caregivers, that supports people living with dementia, would be a real burden and that supports research.

Yeah.

Yes.

That's supports research.

They're looking for discoveries and preventative efforts.

Yeah.

Well, let me get back to your feedback.

I should mention that today's shows are part of the inclusion desk spotlighting issues related to disabilities.

That Inclusion desk is part of move to include a partnership to encourage thoughtful discussion about issues of inclusion.

And when we were talking earlier this hour about the people who are not accessing the services doctor podcast, you mentioned it's a pretty big number of people who don't even access what is out there, lifespan or otherwise.

that prompted a comment from James on our YouTube chat saying, possible stigma could be a reason.

Also, fear of exacerbating a condition once it is labeled.

Now, I understand that fear, but I don't know that labeling it is going to, going to cause it.

If anything, you learn more about it and you try to mitigate it.

But I you know, I have a thought about that.

Yeah.

I think we there are good reasons to encourage people to get diagnoses as soon as possible, especially in light of the treatments that are available.

But I say that it's important to get people diagnosed as early as possible.

But when they're ready to hear the answer, sometimes people aren't ready.

And when they're not ready, they don't hear it.

Or sometimes people shut down and the effects can be devastating on them.

So a family and a person really need to be able to walk up to it, or at least give themselves some space to grasp what it means for them.

And I think we sometimes see caregivers who don't tell people why they're coming to the clinic.

And that's just such a horrible thing to do to somebody, to bring them there and not tell them why they're there.

And because people are really afraid and they don't.

They're not bad people.

They don't know how to have these conversations, and they're hoping that the doctor can fix it.

but it's a scary thing.

It's, it's I always tell people it's like, in a families timeline, it's a nodal event on a family's timeline to get a dementia diagnosis, like getting married or having your first child or buying your first home.

Nothing is going to be the same after that point.

So you we prepare for all those other life events and this is another one.

Unlike getting a diagnosis, you know, for something that's curable, life's going to change for everyone.

And I think we have to help people have the conversations and help people be ready to deal with, what some of the fallout might be from getting one.

Barbara, was there any resistance that you or Bill had to that diagnosis when it first came?

well, no, I was welcoming because I wanted that name to know what was going on.

So so that wasn't a, the the situation for us, but but I just want to add that, you know, times like this to talk about all these things and hopefully encourage the listeners to support, you know, resources for paying for services and making other services available free is so important.

So it's good for us to be talking.

Well, and I take that point.

That's what we're trying to be the public square here, Barbara, and we're glad that you're here for that.

let me ask Katie and Jen about that as well here.

So, you know, Katie, when when James is saying maybe stigma is a concern or a fear of progression, you know, I understand some of the psychology.

What would you want?

listeners to understand about this?

Well, I think those are very real, things I think there is a stigma.

I think, as Barbara said, the more that we talk about this, the more that we there are shows like this, the more that we discuss this.

the it takes stigma away.

I also think that the fear of progression, it's, it's rooted in a real, it's rooted in a real place for us.

I do think that families who start to be concerned start to want to educate themselves more.

It is the real value of virtual education is that you can quietly, at home, privately do some research, go on our website, go on the Alzheimer's Association website.

There's lots of resources out there to start to learn and ask questions.

I think the thing is, if you do, choose to make that phone call and call lifespan connect with University of Rochester, connect with Saint Johns is we are all this is what we do all day, every day.

Our teams are experts and they understand people.

We have the ability to have conversations that are gentle, that are validating, that really where we are.

We are present to really listen and able to reconnect with you at a time when you want to reconnect and move forward.

Just have an initial conversation.

I think we're so fortunate in our community.

to have so many resources where people can learn more and where people can get connected at a at a level that works for them at the time, that it works for them.

Right.

I think I was also thinking that we need to think about how we talk about dementia.

And many people think that when a lot of public opinion polls and studies on this and people think their life will end as soon as they have a diagnosis, but many people, including Bill, you know, have gone on and they have, you know, sometimes years of a quality of life.

I think we have to approach it like we approach other chronic diseases rather than to presented as an illness that the day, you know, the curtain is going to come down, the day you get this diagnosis and nothing will ever be the same.

It's not true that nothing will ever be the same.

That was my thought exactly.

You know, we have videos on our dementia resource center online that tell the stories of people and what they're experiencing.

and, and doing that storytelling and that education around what their lives are like telling, Bill and Barbara story, which we have done, you know, and and having people see that and that there's still a loving couple engaged in a senior living community doing living their life to the fullest.

but, you know, in answer to the caller, you know, not being ready, but there are steps you can take.

You talk about virtual education.

Katie.

we have those videos online on our website and many other websites we have and ask Mary where you can type in a question.

And it's completely anonymous.

a member of our team answers those questions.

So if you're not ready to even talk to a live person yet, but you just want some of your questions answered, there are tools for that.

And there are articles.

So I think there's a way to step into it.

if you're feeling like you're not ready to talk about it out in the open.

Barbara, you you said that you wanted to name it.

You wanted a diagnosis to really at least understand what's going on.

Yeah.

We can't you you can't deny that something was changing.

So that was years ago.

And you mentioned now it's kind of a three second memory.

I mean, it's a different that I imagine that has taken some time to get to that point.

Have there been moments where you've noticed, okay, it's different now.

He is not remembering this or not able to do this.

You know, that probably happens many times a day.

It's not a, you know, a infrequent kind of thing.

It's not something that happens once a week or something, but almost every day, you know, something is different.

I notice.

Oh, he's having trouble getting the toothbrush, toothpaste and the toothbrush.

and, you know, he needs help with that.

Okay, that's another thing to add to.

Okay.

how do we give directions to do that?

So every little thing that that happens, you know, there's a progression.

I mean, we we've seen.

Yeah.

Progression.

We've seen it in our respite program.

We've only been open a year.

And we've had folks that have been with us since the beginning.

And you know, you see the progression.

And I'm sure it's even more real for you by when you're only seeing folks one day a week.

But but we're seeing it.

There's changes I have to give you.

That's one of my favorite quotes, is the hardest thing is grieving the person that that the person was.

In my case, my husband was.

And at the same time, getting to know the person that he is now and making things go along like that.

So the progression just shows that the change over time and, and you deal with it and you move along.

Have you grieved that loss?

Absolutely.

Yeah.

Every day, by the grace that you show is just remarkable.

Barbara and Jen on YouTube says, Barbara's my cousin.

I'm so proud to say that.

So you've got people watching and listening.

we also had, a listener who I don't have the name.

I think it might have been Chris who said that, Chris and Victor.

Thank you.

Team.

Chris and Victor was saying that, I think the point he was making in his comment was that people with dementia might have better long term memory that they can access, as opposed to short term events.

Has that been true for maybe not now, but was that true over time?

Yes.

Yeah.

things will come up.

and something from, from Bill's childhood, for instance.

an example is, his family always went to a cottage on a lake every summer.

And so that he has that memory from, you know, early in its childhood.

And we still go to that same lake in the same cottage.

So now he's excited if he hear us go to the lake because it's a long term memory that comes back.

It's the feeling of it.

I think that he remembers, though, as much as anything.

Doctor.

This stuff.

Yeah, this is where my scientific expertise comes in.

Something is deeply embedded there, it seems.

Right.

I mean, yeah, right.

That's the layperson's interpretation.

But there's something really interesting about the fact that to Bill, as much as he has lost the lake still means something.

Absolutely.

Yeah.

Yeah.

So and and because it started so soon in his life that, you know, been there, you know, is that typical or it is typical.

That is it doesn't necessarily last forever, but it does last a lot longer than the short term memory.

Well, I we've had a lot of great feedback.

And as we get ready to close here, part of the purpose is putting the focus on caregiving today and asking what is needed.

So I'm going to ask our guest to share with you some of what they want to leave with you, because someone listening today is going to be in Barbara shoes at some point.

it's going to be a lot of us.

Some of us might need different services.

And doctor Pat Gorski, what do we need most in this region that we don't fully have right now?

What do we need to do better to address these issues?

Oh, there's so many things.

I think, one of the things I think that we struggle with is people with early onset or younger people, people who get diagnosed younger before the age of 60 or 65, they don't really.

They fall through the cracks.

They don't.

They're not eligible for a lot of the older Americans act money.

they go to respite programs and they're so much younger than everybody else.

their caregivers don't really find the same kind of support when they go to support groups because they're a generation off.

I think that would be off the top of my head.

That would be the first one I think of.

We really don't have enough for people who are diagnosed early or younger.

Jennifer Luzinski Yeah, I think it's just a basic resources issue.

the barriers to us expanding even our respite program is having enough volunteers, you know, so if you have it in the kind of severe, hard to reach out to life span or reach out to Saint John's, and you want to provide meaningful, giving back to the community, you'll love it.

And you will stay and you will want to keep doing it.

I'll tell you everybody that, volunteers for us does, but it's also financial resources.

I mean, that's the reality is, we we're running a capital campaign because we want to build the physical resource center, and we want to be able to make those services available for free.

So, you know, that takes, that takes dollars, unfortunately.

But, but just talking about Barbara, be more like Barbara and start connecting with people and reaching out because you never know who you're going to come in contact with.

They can point you to another resource.

I just think that's a really life lesson for all of us to reach out and connect.

Katie Allen well, that's what I was going to say.

Oh, Barbara, know you're up next anyway.

Yeah.

Go ahead Barbara.

Resources.

You and take care of yourself.

If if you're looking to be a caregiver, that's one of the first things to think about.

Don't.

Yeah.

You know pull back and go within yourself.

Reach out for help.

Okay.

Well, I think the what would Barbara do in our minds, this is a great is a great message to leave with.

But, you know, I really think it is.

It is never too soon, and it is never too late in any part of our life to connect for support and for answers to questions and for help.

I think, contact, any of our community resources.

And if you call lifespan, we can get you in contact with all of them.

And again, we don't go through this life alone.

we don't, you know, and so connecting with people and, and asking for help and accepting help are so valuable and important lessons for all of us.

And, and for people living with dementia that that we are still valuable, people.

I want to bring it back to Joy's email from earlier.

We do talk a lot about Alzheimer's.

There is a lot, really a kind of the world of dementia and the effects of, aging and memory.

And I just want to read.

As we get ready to close, Roger says, unfortunately, a certain person need not be elderly to succumb to memory related illness.

Back in the 90s, I cared for my best friend as he suffered and eventually died from Aids related dementia.

He was only 34.

I learned a lot of life lessons during that time, mainly that when you love someone, you do what you have to do to make their lives better.

And I cannot think of anybody who's model that better than Barbara Smith, who was a caregiver for her husband.

Thank you for sharing your story.

Once again.

It is lovely to see you.

Thank you for being here.

And the whole panel.

Carol, Pat Gorski, doctor Pat Gorski, director of the Finger Lakes Center of Excellence for Alzheimer's Disease clinic, director of the R Medicine Memory Care program.

Thank you for being with us.

Also at lifespan.

Katie Allen, division leader for caregiver services at lifespan.

Thank you for being here.

Thank you.

Jennifer Luzinski, vice president of marketing for Saint John's Senior Living.

Thank you very much for being you for covering the topic.

Audience.

Can you thank these wonderful guests with us on the outstanding panel we had?

Thank you, listeners and viewers for all of the questions.

These two hours on this special.

I was going to call a live program.

We're live every day, but we have a live audience and it's been really great having them.

Thank you for watching.

Thank you for listening.

Thanks for being with us.

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