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For those with a family member suffering from Alzheimer's, no explanation is necessary for those without one.

No real explanation is possible.

Alzheimer's is a cruel disease that often kills the person long before it kills the body.

Is there hope?

What's the latest about what we've learned about the disease?

That's the discussion on this special Mind Matters edition of Northwest now.

Welcome to This Mind Matters edition of Northwest now.

We've got several of these shows planned in the coming months, all focusing on mental health.

Alzheimer's is a brutal, relentless disease.

Alzheimer's slowly damages nerve cells in the brain, responsible for speech, memory and thinking and then progresses to attack the rest of the body's functions.

Typically killing the patient 4 to 8 years after diagnosis.

Como weather legend Steve Poole succumbed to the disease a few months ago, and the data shows that for some reason the Pacific Northwest is a hotspot with a whopping 10% of the 1.3 million Washingtonians over 65 having that disease.

There are several drugs out there now on the market or in late stage trials that seem to show promise, including one that is being given to patients and studied at the University of Washington.

Researchers are also starting to identify the genes that might be responsible for Alzheimer's.

But there's also some evidence that the old standbys can also work to delay the onset.

Like good diet, exercise, good sleep, and quitting smoking.

And as Steve Kitchens tells us, staying mentally active and learning new things.

You are my sunshine.

I always get out of it.

I love to help people.

I've always loved to help people.

Inside Mountain View Community Center in Edgewood.

But Nathan has a folder right now.

See Nathan.

Instructor Lori Arndt uses music and art as a therapeutic tool, healing both caregivers and elders struggling through dementia.

People with dementia can live a good life.

The program is called Opening Minds Through Art.

It uses music to stretch both muscle and mind.

Making art allows dementia patients a chance to stir their creative juices.

It was developed at Scripps Gerontology Center at Miami University in Oxford, Ohio.

I feel like it's important for them to be able to have something joyful to do.

And numerous scientific studies prove the program boosts perceptions of quality of life, diminish distress, anxiety, depression and anger.

We continue to study the effect on students.

So this could be traditional students, medical students.

If you think about the power of understanding student medical students who are virtually going to engage with this population, and it just turns out, yeah, we are making headway.

Today is Ray and Judy Lopez's first time experiencing opening minds through art, a wedding and official diagnosis, Judy says beyond expressing her artistic flair.

Just getting together with others makes her feel better.

This is a good opportunity here.

Just getting me out of the house, if nothing else.

Not pretty.

Across the U.S. and beyond, opening minds to art has touched the lives of more than 6000 caregivers and dementia patients.

Program officials believe their classes can improve the lives of even more.

We need more funding to expand their reach.

Its impact on everyone working in a long term care organization is is phenomenal.

So we need more studies to document those those types of findings.

While dementia takes away one's autonomy, opening mind to art gives back a patient's ability to make their own choices.

At its core, the program allows patients to regain the dignity dementia rips away.

You get to be yourself.

You get to make the decisions you are valued.

In Pierce County.

Steve Keegan's northwest now.

Joining us now are Brad Forbes, the policy director at the Alzheimer's Association of Washington, and Jessica van Fleet Green, a doctor in the multi care System in the Pace Partnerships program that provides a lot of in-home care for the area's elderly population.

how big of a problem is it?

And I've also heard, too, that Washington state is a bit of a hotspot for it, which seems kind of weird.

Why do you think that is?

As you answer that question about how big of a deal it is?

Well, so as of 2020, there were about 120,000 people living in Washington state with Alzheimer's disease.

And that number is actually expected to rise to 140,000 by 2025.

Wow.

And, you know, as we see sort of hitting the bend of the elbow, you know, a big contributor to this is age.

Age is the number one factor in whether or not a person develops Alzheimer's disease.

And as a state, we have a lot of retirees and as the baby boom generation continues to get older, we're only going to see this problem increase.

Yeah, interesting.

And maybe longer Life expectancies come with a price and that that could be part of it.

Jessica, what are your thoughts about the scope of the problem?

Is it is it overwhelming?

Is it manageable with 120,000 people?

That's a good sized city.

Yeah, I agree with Brad 100%.

You know, I find it to be potentially overwhelming, particularly in the next 5 to 10 years.

We have an aging population.

We have fewer and fewer physicians and caregivers, in particular in our area.

And so I think that this problem is one that is important to address now.

And the earlier, the better in terms of getting pipeline for caregivers and for educating families and for ensuring that we have enough medical team members to take care of this population.

What's going on with medical team members is that aging out of the physicians who wanted to do that as a specialty or.

Yeah, I think it's multifactorial.

And I think and I want to be intentional about not being physicians centric because really this is not just about physicians, but this is about in-home caregivers.

This is about our ends opens seniors, this is about social workers to help support families.

So the whole infrastructure, infrastructure, nurse practitioners, physicians, physician assistants, and so in particular as we think about neurology, that specialty is in very high demand.

And early in the diagnosis use.

We rely heavily on our neurology colleagues and and there are fewer of them than primary care physicians and practitioners, and they're also in high demand.

I realize you both have different answers from this one from a policy perspective and another from clinical.

But I wanted to discuss the difference between dementia and Alzheimer's, how they relate.

A lot of people who aren't, you know, don't have a family member or an involved in this heavily use the two interchangeably.

I guess my question to you, Brad, is does it matter or is the Alzheimer's only looking at Alzheimer's and other dementias aren't important?

Or do you look at them all is kind of an umbrella.

How do you how do you approach it and how should we as the public approach it in terms of how we speak about it?

Yeah.

So at the Alzheimer's Association, we work on issues around Alzheimer's disease, which is a specific type of dementia, but we also look at all other dementia and from the public policy perspective, the services and needs of people with any type of dementia tend to be fairly similar.

So we don't differentiate between the different types of dementia when we're making policy or budgetary asks of our legislature.

Okay, Interesting.

So yeah, for from your perspective, you're you're not slicing and dicing that.

It's it's your requests like you said, your structure is, is is based around the whole umbrella of dementia interest.

Yeah exactly.

Yeah.

Clinically Jessica, you've talked about this a little bit before we began the program.

I thought you had a good analogy about explaining this.

For those of us who just, you know, every other word is either dementia or Alzheimer's, we're not being very specific.

How how should we approach that, in your view?

Yeah.

So dementia is an umbrella term of which Alzheimer's is a version.

Frontotemporal dementia is a version.

Dementia with Lewy bodies is a version vascular dementia and other types of lesser known dementia.

And so I like Brad, You know, by the time they get to my care, I take care of vulnerable elders, 55 and older.

It's usually pretty advanced stages and cognitive impairment and cognitive impairment.

It's the same, right.

And how we treat.

But we're it's important to have the distinction is early in the course of the illness, particularly as we look at novel therapies for treatment because those are really targeting specifically Alzheimer's.

And so a mechanism, the mechanism and so early in the course of the disease process, I think that it is important to recognize, but again, more toward the advanced stages we're going to treat everyone with with dementia, regardless of what the underlying etiology is.

We're going to give them the same amount of resources we're going to treat with the same compassionate care and think about symptom management and how we support families in the same exact mechanism.

But as the therapies become more specific, you need to know about the causation of factors.

You have to be more specific in terms of how how we divvy this up.

Right.

And the genetic predisposition is important too.

So for looking at that piece, let's talk a little bit about the state of research in the state of the art.

Brad, I know you're primarily focused on policy, but you're also with the Alzheimer's Association, too.

And I'm sure keeping an eye on that about what's hot, what's not clinical trials that show promise, some that have fallen through, things we should ask for, funding for things that maybe not so much.

So give us a little feeling from your perspective of the state of the art about therapies, or is this an exciting time or is this just part of the long slog we've been in?

Give us some perspective.

We're actually at a very exciting point in the history of Alzheimer's research.

The FDA recently approved the first therapies that have been shown to actually slow the progression of Alzheimer's disease in patients where that diagnosis has happened very early in their experience with with the disease.

And that's a drug that's called La Cannon MAB And so if you or a family member think that that might be something that you would like to pursue, we strongly suggest that you talk to your doctor and see if that that might be something that could help give you more time for yourself and more time with your loved ones.

So early onset.

And this is where we get back to the specificity, specificity question.

You know, you're going you're walking down the Alzheimer's path.

Those are two important qualifiers.

Yeah.

Yeah, they are.

You know, the most important thing you can do if you're having symptoms of dementia is go see your primary care physician and work towards getting a diagnosis as early as possible, because that is when we can use these therapies to hopefully intercept some of the progress.

Jessica I'm sure there's a stack of journals like about so on your desk, so you're probably reading about all these trials and everything going on.

Give us a feel for what's happening out there.

Yeah.

So I think it's a time of cautious optimism and also great excitement.

So up until really the last one or two years, we have really had treatments that work on symptom management and really don't impact the course of disease.

So really just in the last year with La Khanum, our bit has been more promising in terms of the ability to get more toward the root cause of the illness.

But again, the cautious optimism piece is what's really important.

So these drugs are not readily available yet.

There are only a handful of organizations that are doing it, and this is where I also have deference to my neurology colleagues.

I mean, as a primary care doc, you know, I would refer out to neurology colleagues to really look at this after the diagnosis is made and again, targeting Alzheimer's and and that mild and early category.

But what I think is exciting is that because this breakthrough has been made on really treating underlying cause and changing course of illness, which is again, the first time we've really had any data to show that it's changing the course of it.

I think that that's what lends itself to a lot of excitement on potentially what's going to come in the next 5 to 10 years.

And I don't want to be morbid, but but if you can delay the onset, maybe you're going to live to 88 and you die of something else.

You die of a heart attack or whatever, but you haven't had this long, slow loss of personhood with Alzheimer's.

You know, maybe something else.

Gotcha.

Nobody wants to go, but at least it's not that.

Well, I think there's.

Yeah, potentially hope that that is what's going to happen and that it's slowing progression.

You know, we still need to be very clear that this is a progressive neurological disease for which there is no cure.

But for those with Alzheimer's, that when you catch it early.

Exactly right.

We can potentially impact the course of disease.

And maybe you are living a little bit longer and with better quality, which is what's most important to most individuals.

Right.

And that quality of life piece is so important because, you know, for families who have somebody with dementia or Alzheimer's, I mean, the advanced stages of it are very difficult, you know, in terms of people not knowing you or whatever, whatever it may be.

A lot of families have stories about that.

But I want to talk to each one of you about what you do specifically.

Talk to us a little bit about your work with the Alzheimer's Association.

What needs to happen out there in terms of policy on your desk?

You may not have journals, but I'm sure you have a yellow pad with a list of stuff that you want to accomplish.

What's on that list?

And I'm sure it has to do with things like home health care, caregiver support, what are the things we need, What's on your task list?

So one of the major steps that our state government can take is to make sure that we are coordinating efforts throughout the various departments of of our state government because the number of people with dementia in our state is increasing.

And to meet this crisis head on, the government needs to be prepared and organized and ready.

And so I am the co-chair of our state's Dementia Action Collaborative, or the DAC, as we call it, and the DAC worked over the last couple of years to develop an updated state plan to address Alzheimer's disease.

So we have a set of recommendations for the legislature and our state agencies to take over the course of the next five years to help meet this crisis head on.

And one of the first steps that would be appropriate to take is we are advocating for funding in the legislature $168,000 to create a new position in the Department of Health that is solely focused full time on working on dementia programing because the Department of Health works on early intervention and public awareness, which are two of the most important actions that the state can really help with to get people into their doctors and diagnosed as early as possible.

And so I feel like 168 grant is very doable.

What are what are you swinging at the fences for?

What are the big things you need?

I mean, some day we'd like to see blue water.

Go ahead.

Be aspirational.

Yeah.

So there are a couple of other things.

One is we really need to grow our office of public guardianship, because oftentimes, if people advance to a point in the disease where they can no longer make decisions for themselves, especially if they don't have family members or family members in the area who can act as as an adult guardian, we need to make sure that they have decision makers to help with everything from any any kind of contract to maybe placement in a long term care facility, if that's appropriate.

So we're looking to grow that program.

And also, I want to take a moment to touch on caregiving because a family caregiver is oftentimes the first caregiver that person has as they're beginning to advance through the dementia process.

And being a caregiver is significantly more stressful than a full time job.

And it really weighs down on the individual.

And so we're also seeing there are equity issues because caregivers are caregivers are almost always women spouses or adult daughters.

And so to make sure that the caregivers can continue their lives and continue their careers, we really need to incentivize people to go into professions such as in-home care and make sure as well that our long term care system is fully funded so that when it's appropriate, people can move into, say, an assisted living facility where they're cared for and they're attractive jobs with some some a minimum pay requirement and some of those kinds of things, good benefits.

Yet, Jessica, short of a cure, which I know you'd like to just to materialize on your desk, what is what do you need to better serve patients?

How does Pace fit into that in your system?

So talk a little bit about your work and what you need.

Right.

So, well, again, I agree with Brad wholeheartedly that really having a good pipeline for caregiving and a really good process for guardianship in our state, I think in the now is a really good first step.

So the position that myself and my colleagues are frequently put in, whether we're in the PACE clinic or in the hospital, is that if they do not have surrogate decision makers, we know we cannot meet their needs and frequently they stay in the hospital and that is not the place for patients that have dementia or dementia related symptoms.

It's really difficult for them to be in a hospital setting their best served in a home like environment that is not very stimulating.

So I think if I were to wave my wand, it would really be a lot of support and resources.

To your point, with a well-paying, highly desirable jobs, we need to to make it attractive for people to want to go into caregiving, particularly since the COVID devastation, home caregiving, long term care, it has really been dramatically impacted and it's going to take a long time to recover.

So we need support and we need places for these patients to go and to get the care that they need.

And in a really age friendly format.

I have a little heading here on this section, and it's called The Ugly Truth Money.

And how does that fit into all this?

It can break families.

It can be very expensive.

You talked about people needing guardianship.

Typically, those are folks with without assets.

People with assets have lots of people, you know, ready to step in and be guardians.

We hear the stories, horror stories from families whose assets have been drained.

Any thoughts about that in terms of solutions or some policy prescriptions that can help alleviate some of that?

Yeah, I mean, so there's there's a couple of things that we can do.

One is to ensure that our state has as robust of a medicaid program as possible.

Medicaid being the program that people are involved in once they've spent down their assets, making sure that people can still receive services that work for them and provide them with the dignity of a good life, even if they have spent down into poverty.

And I do also want to highlight, secondly, that a couple of years ago, the state passed a long term Care Trust Act, which will pay up to $36,000 to an individual who needs long term care services without them needing to spend down into poverty.

And the long term care services are both in settings such as an assisted living facility or a nursing home, if that's necessary.

But the funding can also be used to do things like retrofit your home so that there are fewer fall risks.

Yeah, because memory care is, you know, seven, eight, $9,000 a month.

And so, yeah, the home care, that's where the home health care piece steps in and trying to retrofit and do those things.

You're nodding your head.

Go ahead.

Yeah, absolutely.

And I was saying 78,000 at a minimum.

And so, you know, looping back to the question that you previous asked, when we talk about PACE organizations, those are resources for patients who are largely underserved.

So a lot of Julie eligible Medicaid and Medicare.

And so really infusing more into programs like that to combat exactly the issue you talk about where they don't have the funds you know they don't have the nest egg.

And so we're not talking about people who have large funds to be able to get into those memory care facilities and be able to spend ten, $15,000 a month on memory care.

Right.

And if you're not one of those individuals, you end up on Medicaid and then end up in on a long term care unit, which again, as a skilled nursing facility and medical director for years, they can provide wonderful care to these patients.

And it also is always not the right setting.

And so and if COVID taught us anything, it was really that there are some risks to to some congregate settings.

And so really making sure that it's right care, right time, right place.

And when we think about what matters most to patients, their families and caregivers, many of them want to be in a more home like environment.

You know, they they want to be in their home or they want to be in someplace similar.

And so thinking about how we can get to that place without breaking the bank is really critical.

Yeah.

Is that a that's a big one.

And of course, you know, people don't want to talk about folks falling through the cracks.

But Alzheimer's is one of those diseases where even somebody with assets can fall through the cracks because it's just so daunting, you know, and I'm surprised you're number what did you say, 10 to 15 a month?

yeah.

For the higher end memory care and moderate.

Yeah, memory care.

I mean, it is very, very expensive for families.

And so that is why we need robust infrastructure for those who cannot afford it.

So I think that it's really critical that we think about that.

And again, the next 5 to 10 years, we are going to have more and more patients with dementia who need this type of care.

And so if we are not forward thinking enough about memory care facilities and how we are going to accommodate these patients, many of them will end up inappropriately in hospitals because hospitals are community safety nets.

Yeah, Yeah.

So Brad is there a policy solution for something that costs 10 to $15000 a month and or or does that long term, that short term disability kick in because folks don't spend a long time in that particular period of the disease?

It may not be six years, it may be their last nine months, and maybe it's more doable.

How do we how have you broken that down?

And is there such a thing as a policy solution for a disease that can run you 9 to 10, 11, 12, maybe up to $15,000 a month?

Yeah.

You know, if a person has Alzheimer's disease or any other dementia, the most important thing to do, as I mentioned earlier, so forgive me for saying it again, but most important thing to do is to get your diagnosis as early as possible.

So if you or a loved one is having any symptoms, go to the doctor and talk to them about that.

Get a cognitive assessment, because once you get a diagnosis and you can sort of see where you are in the progression of Alzheimer's or another type of dementia, then you can start really planning out what what your needs are in the short, medium and long terms.

Right?

If you have private insurance, you may be in good shape.

But yeah, or if you have Medicare because Medicare will pay for a cognitive assessment and and then that way you can hopefully take steps to live in your own home as long as possible.

I know you mentioned the benefits of that, and I think that is really important, being in a familiar setting and also providing yourself with the autonomy of choosing your own setting.

Yeah, okay.

Fair enough.

Last 30 seconds.

I want to make sure that you get a chance to talk about where folks can learn more.

Brad If people want to get in touch with the Alzheimer's Association, learn more.

Look at a lot of the information you have on the site.

How do they go about doing that?

So I would say that the first thing that you should all know is that we have a 24 seven helpline.

This helpline is staffed 24 seven 365 with master's level social workers who can help you with any question around dementia, whether you're looking for an assisted living facility or looking for in-home resources in your own local community.

And that number is one 800 2723900.

You can call anytime, day or night with with any question.

We can we can guide you to local resources.

And Jessica, briefly for you.

Yeah.

So for those interested in PACE organizations who maybe do not have the resources as we discuss, they can go to the National Press Association website, they can go to Multi Care's website for Peace partners.

For those outside of Pierce County.

There are two other PACE organizations in the state of Washington, so highly encourage people to do that and agreed highly recommend people seek out their primary care physician.

This is an opportunity for patients and their caregivers, you know, not to be in denial, which I think is really hard.

It's hard to admit that you're having memory issues.

And so I really just encourage people to to be assertive in knowing that maybe something isn't quite right and and seek early treatment, a diagnosis.

Good conversation.

Thanks, both of you for coming in.

Thank you.

Alzheimer's is really a family disease because while it's harming the patient, it's also taxing caregivers and families emotionally, financially and logistically.

The bottom line, this is the kind of thing the United States needs a moonshot to fix rather than getting bogged down in divisive politics and division.

Thank goodness there is still a core of meritorious, high achieving scholars, researchers, doctors and policymakers working here in what is still, for now, the country most likely to produce important results.

I hope this program got you thinking.

Good talking to watch this program again or to share it with others.

Northwest now can be found on the web at kbtc.org and be sure to follow us on Facebook and Twitter at Northwest.

Now, a Streamable podcast of this program is available under the Northwest now tab at kbtc.org and on Apple Podcasts and Spotify.

That's going to do it for this edition of Northwest Now Until Next Time.

I'm Tom Layson.

Thanks for watching.